Advice on when to seek specialist

[airial95]

re T/A: Dr. Tanya Murphy (PANDAS specialist in FL) actually is anti-T/A b/c she has seen kids (note: I'm not sure if these where mainly kids who didn't get antibiotics during/after sx?) whose PANDAS gets a lot worse post surgery. (She discussed this at her presentation at the IOCDF conference in San Diego this year). I also agree with others about antibiotics being really critical during sx (and after) to prevent a big flare.

 

Also, be aware that lots of kids still get strep after T/A.

 

 

Dr. Murphy isn't exactly anti-T/A. She's our specialist and was on board/recommending T/A for our son. She's not for T/A JUST because of PANDAS for a couple of reasons that she explained to us: 1.) Some kids may get worse (Although our son was 100% immedeiately after T/A for the first time in 2 years), 2.) T/A won't necessarily prevent strep. She's supportive of T/A as a treatment course if there's other supporting reasons for it - in our son's case 8-10 documented strep infections in 18 months while on abx for 15 of those 18 months.

 

And YES - they can still get strep. Our son was on augmentin for almost 60 days post-op and one week after finishing the abx he tested positive for strep on Monday - so after having him back 100%, we're living our nightmare all over again.

[PowPow]

This is the list I think you being referred to -

list of helpful docs

 

also, www.pandasnetwork.org is very helpful. She can also contact with some geographically local people to you who can help.

[nicklemama]

I just discovered you have to go to page 4 of the above link and scroll about halfway down to find the doctors by state link. I don't know why this is not pinned separately so folks won't have to do so much digging for it. Anway, it lists two dr's in your area but I'm not sure this is an up to date list.

[EAMom]

I just discovered you have to go to page 4 of the above link and scroll about halfway down to find the doctors by state link. I don't know why this is not pinned separately so folks won't have to do so much digging for it. Anway, it lists two dr's in your area but I'm not sure this is an up to date list.

 

Here's the consolidated list by state:

http://www.latitudes.org/forums/index.php?showtopic=6428

 

(Not sure when it was last updated, so it might be missing some docs from the other list?)

 

Also, other threads where Texas is mentioned

http://www.latitudes.org/forums/index.php?showtopic=8318

and

http://www.latitudes.org/forums/index.php?showtopic=8144

and

http://www.latitudes.org/forums/index.php?showtopic=13652 (see esp. post 15)

Edited January 13, 2012 by EAMom